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Jacob

(Age 7)

Alberta

Jacob’s Journey: Our Fight Against Duchenne

Our son Jacob is a bright, curious, and strong-willed 7-year-old. He loves hockey, the Edmonton Oilers, camping, and riding his bike. He lights up every room with his smile and sense of humor. He is the kind of kid who sees the world with wonder and meets challenges with quiet determination.

    

Jacob was always a little bit slower, and a little clumsier than the other kids. Something he would surely grow out of. Right?

We started noticing small things — he was having trouble climbing stairs, keeping up with friends, and getting up off the floor. We knew something was not right. In the summer of 2023, after many doctor visits and tests, we received the diagnosis: Duchenne muscular dystrophy.

Those words changed our lives. It was overwhelming, heartbreaking, and hard to believe. We were faced with a reality we never imagined for our 5-year-old child. But in that moment, we made a promise — that we would do everything in our power to support Jacob and fight for his future.

Every day brings new challenges. Preparations for the future and the unknown. Duchenne is relentless, but so is Jacob’s spirit.

As his muscles weaken, we adapt — with equipment, with support, and most of all, with love. Jacob continues to face this disease with a strength that inspires us every day. His courage reminds us that Duchenne does not define him — his heart does.

We have found strength in community. Organizations like Defeat Duchenne Canada have given us hope and the knowledge that we are not in this alone. The research, advocacy, and support they offer are vital, not just for our family, but for every family living with Duchenne.

 

We are sharing Jacob’s story because we believe in the power of awareness and connection.

We believe that every voice matters, and every story brings us closer to better treatments, and one day, a cure. Jacob deserves that future — all children with Duchenne do.

Thank you for listening to our story, and for standing with us in this fight.

Sincerely,
The Bonin’s